Published: Sunday, August 18, 2013 at 2:00 p.m.

Last Modified: Thursday, August 15, 2013 at 2:49 p.m.

That's how Kristen Porche, of Bayou Blue, describes her son, Parker, who doctors predicted would not live very long after birth. He'll turn 2 this month.

Kristen, 27, and her husband, Jason, received Parker's diagnosis when she was 30 weeks pregnant. At a routine ultrasound, doctors noticed that nearly all her amniotic fluid was gone.

Her obstetrician sent the couple to a specialist in New Orleans that same day, where they got news they couldn't have imagined.

Parker, the couple's only child, had Autosomal Recessive Polycystic Kidney Disease, a genetic disease doctors were sure would prove fatal.

“You kind of become numb,” Kristen said. “You can see people talking, but you really don't hear what they say. I just asked, 'Is he going to live?' They said no.”

The disease causes large cysts to form on the kidneys, which impair function and eventually cause kidney failure. Parker's kidneys took up most of the space in his abdomen and that, coupled with the lack of amniotic fluid, left his lungs poorly developed.

Understandably, the news hit the couple hard.

“It was definitely eye-opening,” Kristen said. “He told us if we had been prior to 24 weeks, he would have recommended termination. That just would not have been an option for us.”

Instead, Kristen had her own plans.

“I didn't want to accept it,” she said. “I did my research. There are a lot of people with this alive and fighting.”

She also created a blog, where she shared her story and updates on Parker's health with friends and family.

Parker was born Aug. 26, 2011, a month early. Since then, life for the Porches has been a whirlwind of doctor appointments and hospital stays.

Surgeons removed both of Parker's kidneys that September. Soon after, his parents started connecting and disconnecting their son from a dialysis machine at home every night. Each day, they give him his medicines and check his vital signs.

“It was very stressful at first,” she said. “But to be honest, this is normal for us.”

The family started looking into transplants for Parker from the get-go, but children are required to weigh at least 10 kilograms — about 22 pounds — before they can undergo a transplant.

The 1-year-old uses a feeding tube hanging from his nose to get the necessary calories every day and keep his weight up. Today, he weighs about 12 kilograms, Porche said.

When she got approval from doctors to start the donor search, Kristen said she posted on her Facebook page asking if friends or family members were willing to get tested.

Her cousin, Patty Martin, stepped up to the plate.

“I just went and got tested,” she said. “Knowing the family, it just felt like the right thing to do.”

Martin, of Houma, was a match, but before she and Kristen could get into the operating room, the plan hit a snag.

Parker's disease goes hand-in-hand with Congenital Hepatic Fibrosis, which affects the liver. Though Parker's liver functions well, it wasn't draining properly and he developed Portal Hypertension.

Since blood could not flow through the liver, his body created a new way for it to flow around it. His doctors in New Orleans were concerned that he may need a liver transplant as well, and referred the family to Children's Hospital in Philadelphia.

There, they've started the process over again.

Doctors say Parker could undergo the transplant as early as next month, but the process could also go on until November.

“It really depends on what happens,” Kristen said. “They'll have to review records and do more tests. Once they're both approved, legally, Patty has to be given two weeks to back out of the surgery.”

But Martin said she could never consider changing her mind.

“We're in this together,” she said. “I feel like this is something I was meant to do. I really can't put it into words.”

Martin describes Parker as a “golf cart nut” who loves to play as much as any other 2-year-old.

“For being as sick as he is, he's really a happy-go-lucky kid,” she said. “You can't help but fall in love with him.”

Kristen said the first three months after transplant are the most critical — doctors will monitor Parker and do lab work several times a week to be sure the process goes smoothly.

Since Parker will need to get plenty of nourishment to keep his new kidney healthy, Kristen said he will use his feeding tube for about a year after the surgery.

“It's an adult kidney,” she said, “so he has to take in enough fluid every day to keep an adult kidney happy.”

While the transplant is certainly a victory for the Porche family, Parker will have to fight his disease for the rest of his life.

The average kidney transplant lasts between 10 and 12 years. Though his parents plan to do everything they can to maintain the organ's health, it's likely that Parker will need at least one more transplant in his life.

“People think a transplant is a cure,” Kristen said. “It's just a Band-Aid.”

But for now, the family is focused on their current goal — giving Parker a normal childhood.

Kristen dreams of giving her son a bath in a bathtub, instead of wiping him down with a wet rag. She's anxious to see his face free from tubes and tape.

“We're trying to give him a second chance at life,” Kristen said, “a chance for him to live as normal a life as possible and do what every other child does.”

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